Friday, September 10, 2010

Home Sweet Home...kinda

The last 24 hours have been a whirlwind of relief and love, please forgive me for not posting last night!

Today was spent running back and forth from the apartment (through FRESH AIR AND SUN!) to MDA for blood work and then a 3 hour magnesium infusion. This post will be short because I'm a little sleepy:) Toward the end of my infusion this afternoon, which took place in what was basically a hospital room, Elsa the AYA coordinator popped her head in and said that she had someone for me to meet. She has been trying to track down another CML Stem Cell/ BMT patient my age to talk to, and today she succeeded. Montreal is 25 and just came off of his 100 days from his allo transplant (related donor- his only sister was a perfect match, AMAZING!) and was in the clinic today to interview for a spot on the young adult council. I can't even tell you what it felt like to talk to someone who understands, like really understands, what it's like to have an old person's disease that is controlled in 98% of patients. He was funny, honest and in amazing health. We laughed about Gleevec 'the magic pill' (HA.), what the 100 days experience is like and our time on G9 (the Peds floor). Marcel hung out for a good hour and a half and it was just awesome to meet him and I'm so grateful to Elsa for introducing us. Thanks Elsa:)

Here is a photographic walk through the last day or so. Enjoy!

This was the view from my bed to the "outside". Yes, that's a fucking wall. BUT....

Those prisms on the top of the window created rainbows on my wall in the late afternoon. They started on my bed and then worked their way to the wall. Those rainbows got me through the toughest chemo day I had. I remember being so sick and miserable and I opened my eyes to see a rainbow on the quilt in front of me. I knew everything would be OK.
So, I've been meaning to post this picture. This little pink Ganesh was a gift from two dear friends, Justicia and Shawn. He sat there on my tray table looking down on me (next to St. Peregrine) the whole time I was in the hospital. Removin' those obstacles like whoa:)

Stuffed crust pizza with peppers! It was not as satisfying as I hoped it would be.

This, however, was SO satisfying. And comforting. And NORMAL. P made his chicken parm last night. See that big salad? Totally ate some and then found out today that I'm not allowed to eat lettuce. I got uh....reallyfuckingscared...and then they told me that once was OK because my numbers were good, just not to do it again. Oy.

Meet my little lizard friend:) These guys are everywhere in this plant which grows along our patio. I love him.

A shout out to the sister on this one. E sent this to me when I was in the hospital and tied to the bag of ice on my head (when you can't take tylenol, ice is the BEST solution. trust.) My noggin' (P has decided to refer to my now completely bald head as my "noggin'" until the hair grows bake) was a poundin' tonight and this thing did the trick. Thanks sis:)

Thank you so much for the comments and emails of support and love yesterday, dear friends. Your love sustains:) FYI, tomorrow afternoon I'm going to try to broadcast live from my account. If you would like to join the fun (you can talk to me!! wahoo!), please either check FB around 3 or go to com and search 'hollowmeout' to subscribe to my channel. I hope to be able to talk live with you!!

Much love (and fall weather!) Philly!


  1. SO glad you have the comforts of (a) home surrounding you. GREAT preparation for you arriving at your own home in the future! Keep taking things day by day ... each day brings you closer to Philly! And we can't wait!